Copyright Statement

Abstract

With growing emphasis on the importance of scientific evidence through clinical trials, qualitative studies have been used
to deepen our understanding of research from participants’ perspectives. For people with a chronic illness, research
participation could represent an additional impost on lives already overwhelmed with medical and care issues, and
little is known about participants’ motivations when the research requires them to think differently about their illness
and participate over an extended period. We interviewed participants with chronic obstructive pulmonary disease
participating in a trial of a chronic disease self-management (CDSM) program. Our finding that people participate in
research for altruistic reasons has similarities with other studies. We then extend our understanding of why people
participate to explore how they participate. We argue that motivation based on dominant voluntaristic or altruistic
values can be problematic for researchers attempting to demonstrate the benefits of CDSM strategies.